Patient Voice

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The Youngest Victims: A Mother’s Perspective on Long COVID Research and the ME/CFS Reality We’ve Lived

The Youngest Victims: A Mother’s Perspective on Long COVID Research and the ME/CFS Reality We’ve Lived

As a mother who has watched my child suffer with ME/CFS for ten years, I felt a complex mix of validation and heartbreak reading the groundbreaking study published in JAMA Pediatrics. Finally, researchers are documenting what I've witnessed firsthand: viruses can...

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Sigh

Sigh

Sigh By Lori Harpell 3/25/2024 Feeling like a deflated balloon, Swirling in a dirty gutter... Hazel is confused, Bob is worn out... Bathroom to recliner, Recliner to bathroom... Hours resting with closed eyes, Listening to the quiet sounds outside... A bed bath, A...

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Me and my ME

Me and my ME

Me and my ME Who is me, or rather who am I, and what is ME? My name is Dr Bear Lawrence, and I’ve enjoyed an interesting life. I’ve worked as a delivery driver in Norway, a helicopter tour pilot in the Caribbean, and a flight instructor in Oregon. In the UK I’ve been...

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Stuck with ME

Stuck with ME

Stuck with ME Let me tell you a little bit about ME I am a monstrous intruder I am your worst nightmare You do not want an invasion from ME I break in through the tiniest cracks anyway There is no avoiding ME I creep in when you least expect ME I am a perpetual thief...

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Slowly Dying

Slowly Dying

**Trigger Warning. This poem may be difficult to read for some individuals. Please take care. Here is a link to BHC's Crisis Resources page.**   Slowly Dying I'm on earth, and I no longer feel like I'm living; instead, I'm slowly dying. It's like being in a...

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You & M.E.

You & M.E.

You & M.E. Grief that remains a forever process. Revolving door, repetitious. The body I once took for granted. The endless energy I once had. Nothing good comes from resentment. Evaluating the symptoms present. They come and go, multisystem involvement. I feel...

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A Good Day…

-Margo This was submitted as part of the Reflections of ME/CFS and FM and Long COVID Awareness Day Virtual Event on May 9th, 2023. #MillionsMissing #MillionsMore #Hope4MECFS #Hope4FM #Hope4LongCOVID #patiencevoice

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Watching the World

Watching the World

Watching the World   I open the door from my room I watch the world People in school for degrees People on sunny sandy beaches People winning awards People on trips with friends I love watching everything I dream of joining in I wonder about being part I close...

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